Daria's Lyme & Babesiosis Battle
Donation protected
Hello,
My name is David; I am a 27-year-old resident of Connecticut, thyroid cancer survivor, and devoted husband to the most generous and gentle woman I've had the pleasure of knowing: Daria. During my fight, she wasted no time or words to become the sole keeper of the household and my primary caretaker. I was restricted to a low-iodine diet and solitary confinement
due to radiation therapy (akin to chemo), meaning everything I ate needed to be freshly prepared to ensure the iodine content did not disrupt my treatment. And trust me when I say this is not as easy as it sounds. Most labels do not adequately disclose iodine content, and many foods that contain salt wouldn't dream of even mentioning whether/how much iodine they contained. This diet and confinement lasted several weeks and spanned every meal of the day. And my wife did all this plus every house chore your average childless family incurs, despite working full-time—and, unfortunately, being ill herself.
My wife, like many in tick-infested areas of the United States and abroad, has Lyme Disease. Worse, hers is of the chronic variety, meaning she not only deals with the flu-like symptoms and physical pain and fatigue associated with the disease, but she also suffers from neuroborreliosis (neuropathy complications which include symptoms such as short-term memory impairment, headaches, fevers, brain fog, and other cognitive dysfunction). And because she is beyond the acute phase of the illness, this is something that could affect her for years while we seek treatment. It has already taken so much from her, including the ability to work (for the time being), the desire to have children (which would likely bring about more illness for my wife and/or cause the children to become ill themselves if carried/delivered in her current state), cognitive function, and just the general and taken-for-granted ability to go out or have fun for no apparent reason whenever she feels like it.
My wife, the trooper that she is, has been dealing with symptoms of Lyme (and its related coinfections) since at least May of 2015 (if not longer). Unbeknownst to both her and I, she's also been suffering from Babesiosis due to a less-common species of the bacteria Babesia (duncani). And though many have never heard of this, it's one of the more common illnesses associated with tick-borne disease. It has even gone so far as to hospitalize her last November with the inability to breathe and absorb proper oxygen levels, heavy pressure on her chest, and arrhythmia. One might hope she was able to receive some answers from her emergency room visit and all of the associated testing; this of course was not the case as all tests and markers came back negative or unindicative of measurable problems.
Such is the plight of many Chronic Lyme Disease sufferers, and despite the number of CDC-recognized cases of Lyme each year, insurance carriers and doctors alike refuse to give credence to a long-term infection that debilitates its victims. I won't go into that here, but here's the simplified story.
Before March and for much of the past year, my wife's anxiety has risen to higher levels than I'd ever seen. Most things made her anxious, including severe stress at the conclusion of a weekend or the beginning of a new week, knowing what the next work day would bring. Most mornings would begin with a feeling of exhaustion, despair for the day's stress ahead, and a knowledge of just how horrible she would feel before her adrenaline or other hormones would kick in to subside her pain once the day got going. She's previously told me she cried most mornings at work to help relieve the pain, something I was generally aware of but didn't realize it occurred quite so often. I am sure many of you understand how helpless you can feel knowing how much a loved one is going through, yet feeling as though there is nothing you can do to make their pain disappear.
In early March 2016, after the stress of my cancer and her work/life load became paramount, the disease finally hit her so hard she could no longer work. She took a leave of absence to fight this disease head-on, and full-time. I was more than happy to take over as her caretaker after all she's done for me, but naturally, one salary cannot always support two people; especially when medical costs mount for both of them. Daria applied for short-term disability (STD) and played a two-month waiting game before hearing the most dreaded thing an ill person could hear given what they're already going through and how much they already incur financially above and beyond their normal daily life.
She had been denied coverage.
The same week, we found out she has one of the most common coinfections of Lyme, Babesiosis. This protozoan parasite mimics malaria to some degree both in appearance and function, and can become deadly to some patients if left untreated. And unfortunately for my wife, I doubt Babesiosis is the last coinfection we find out she has. We are beginning to have a bad feeling she may have Bartonella as well, which is borderline impossible to detect (never mind treat).
On top of all this, Daria is taking some 40+ supplements for previously-diagnosed genetic shortcomings and deficiencies (i.e. the inability to properly convert B12 to its bio-ready methyl form due to MTHFR deficiencies; mitochondrial dysfunction; Ehlers-Danlos Syndrome or EDS; the list goes on), and the monthly cost for these exceeds that of a fairly luxurious car. This will probably continue on for life. We put forth our best efforts to manage our income and outflow to afford these, but when life hands you new lemons (and "Lymes"), it becomes a weight difficult for most people to bear. We are fortunate to be able to afford her supplements when she is working, but I'm quickly depleting my life savings to help cover the cost of her ongoing appointments and medical treatment while she's out of work without pay.
One of the reasons she was denied was a lack of documented cognitive dysfunction. There are tests available to do this, but our insurance will not cover it and it is very costly. The test we likely need to have any chance of winning our STD appeal is expected to cost $5,000. And even then we're looking at legal fees to submit a strong appeal case. Add on top of it the normal cost of her treatment and appointments, and I'm quickly losing hope that I can provide what she needs to get well.
My wife has not asked for and does not deserve any of this affliction. But through it all, the last thing she would do is ask for a helping hand. In fact, she has no idea I've posted this. She does not want to put a financial burden on anyone and constantly apologizes to me for the stress she's caused our budget. She tells me she's sorry for being sick, as though she did anything wrong, pleading with me not to leave her (as some people actually do when their spouse is sick long-term, but I couldn't be paid to do to her). I told her I would care for her in sickness and in health, and I still pledge to do so unconditionally.
I cannot take "no" as an answer from the STD carrier, but we cannot fight them on our own. Any proceeds we receive will be used exclusively to obtain the cognitive testing needed to prove our case in appeals. In the event the world's generosity exceeds that amount, any overflow would go toward prospective medical care for her. God knows there is no shortfall of that, especially with the real possibility she may need to undergo IV antibiotic therapy (an expensive event even our insurance may not cover).
I cannot find the words to express how much it would mean to us and our family to be able to undergo this testing and win our appeal. And, quite honestly, us winning is a step in the right direction for Chronic Lyme sufferers as a whole. Most of them are hopeless, and hopelessly in debt; but after how much she's been through—and how much we've been through together in a short year—it would mean the world to us for any support at all. And if you can't donate, even a word of encouragement would be so sincerely appreciated. Every bit of kindness and a reminder that everything will work out makes the battle all that much more bearable.
I thank you with every inch of my heart for reading this and doing whatever you can to help us.
My name is David; I am a 27-year-old resident of Connecticut, thyroid cancer survivor, and devoted husband to the most generous and gentle woman I've had the pleasure of knowing: Daria. During my fight, she wasted no time or words to become the sole keeper of the household and my primary caretaker. I was restricted to a low-iodine diet and solitary confinement
due to radiation therapy (akin to chemo), meaning everything I ate needed to be freshly prepared to ensure the iodine content did not disrupt my treatment. And trust me when I say this is not as easy as it sounds. Most labels do not adequately disclose iodine content, and many foods that contain salt wouldn't dream of even mentioning whether/how much iodine they contained. This diet and confinement lasted several weeks and spanned every meal of the day. And my wife did all this plus every house chore your average childless family incurs, despite working full-time—and, unfortunately, being ill herself.
My wife, like many in tick-infested areas of the United States and abroad, has Lyme Disease. Worse, hers is of the chronic variety, meaning she not only deals with the flu-like symptoms and physical pain and fatigue associated with the disease, but she also suffers from neuroborreliosis (neuropathy complications which include symptoms such as short-term memory impairment, headaches, fevers, brain fog, and other cognitive dysfunction). And because she is beyond the acute phase of the illness, this is something that could affect her for years while we seek treatment. It has already taken so much from her, including the ability to work (for the time being), the desire to have children (which would likely bring about more illness for my wife and/or cause the children to become ill themselves if carried/delivered in her current state), cognitive function, and just the general and taken-for-granted ability to go out or have fun for no apparent reason whenever she feels like it.
My wife, the trooper that she is, has been dealing with symptoms of Lyme (and its related coinfections) since at least May of 2015 (if not longer). Unbeknownst to both her and I, she's also been suffering from Babesiosis due to a less-common species of the bacteria Babesia (duncani). And though many have never heard of this, it's one of the more common illnesses associated with tick-borne disease. It has even gone so far as to hospitalize her last November with the inability to breathe and absorb proper oxygen levels, heavy pressure on her chest, and arrhythmia. One might hope she was able to receive some answers from her emergency room visit and all of the associated testing; this of course was not the case as all tests and markers came back negative or unindicative of measurable problems.
Such is the plight of many Chronic Lyme Disease sufferers, and despite the number of CDC-recognized cases of Lyme each year, insurance carriers and doctors alike refuse to give credence to a long-term infection that debilitates its victims. I won't go into that here, but here's the simplified story.
Before March and for much of the past year, my wife's anxiety has risen to higher levels than I'd ever seen. Most things made her anxious, including severe stress at the conclusion of a weekend or the beginning of a new week, knowing what the next work day would bring. Most mornings would begin with a feeling of exhaustion, despair for the day's stress ahead, and a knowledge of just how horrible she would feel before her adrenaline or other hormones would kick in to subside her pain once the day got going. She's previously told me she cried most mornings at work to help relieve the pain, something I was generally aware of but didn't realize it occurred quite so often. I am sure many of you understand how helpless you can feel knowing how much a loved one is going through, yet feeling as though there is nothing you can do to make their pain disappear.
In early March 2016, after the stress of my cancer and her work/life load became paramount, the disease finally hit her so hard she could no longer work. She took a leave of absence to fight this disease head-on, and full-time. I was more than happy to take over as her caretaker after all she's done for me, but naturally, one salary cannot always support two people; especially when medical costs mount for both of them. Daria applied for short-term disability (STD) and played a two-month waiting game before hearing the most dreaded thing an ill person could hear given what they're already going through and how much they already incur financially above and beyond their normal daily life.
She had been denied coverage.
The same week, we found out she has one of the most common coinfections of Lyme, Babesiosis. This protozoan parasite mimics malaria to some degree both in appearance and function, and can become deadly to some patients if left untreated. And unfortunately for my wife, I doubt Babesiosis is the last coinfection we find out she has. We are beginning to have a bad feeling she may have Bartonella as well, which is borderline impossible to detect (never mind treat).
On top of all this, Daria is taking some 40+ supplements for previously-diagnosed genetic shortcomings and deficiencies (i.e. the inability to properly convert B12 to its bio-ready methyl form due to MTHFR deficiencies; mitochondrial dysfunction; Ehlers-Danlos Syndrome or EDS; the list goes on), and the monthly cost for these exceeds that of a fairly luxurious car. This will probably continue on for life. We put forth our best efforts to manage our income and outflow to afford these, but when life hands you new lemons (and "Lymes"), it becomes a weight difficult for most people to bear. We are fortunate to be able to afford her supplements when she is working, but I'm quickly depleting my life savings to help cover the cost of her ongoing appointments and medical treatment while she's out of work without pay.
One of the reasons she was denied was a lack of documented cognitive dysfunction. There are tests available to do this, but our insurance will not cover it and it is very costly. The test we likely need to have any chance of winning our STD appeal is expected to cost $5,000. And even then we're looking at legal fees to submit a strong appeal case. Add on top of it the normal cost of her treatment and appointments, and I'm quickly losing hope that I can provide what she needs to get well.
My wife has not asked for and does not deserve any of this affliction. But through it all, the last thing she would do is ask for a helping hand. In fact, she has no idea I've posted this. She does not want to put a financial burden on anyone and constantly apologizes to me for the stress she's caused our budget. She tells me she's sorry for being sick, as though she did anything wrong, pleading with me not to leave her (as some people actually do when their spouse is sick long-term, but I couldn't be paid to do to her). I told her I would care for her in sickness and in health, and I still pledge to do so unconditionally.
I cannot take "no" as an answer from the STD carrier, but we cannot fight them on our own. Any proceeds we receive will be used exclusively to obtain the cognitive testing needed to prove our case in appeals. In the event the world's generosity exceeds that amount, any overflow would go toward prospective medical care for her. God knows there is no shortfall of that, especially with the real possibility she may need to undergo IV antibiotic therapy (an expensive event even our insurance may not cover).
I cannot find the words to express how much it would mean to us and our family to be able to undergo this testing and win our appeal. And, quite honestly, us winning is a step in the right direction for Chronic Lyme sufferers as a whole. Most of them are hopeless, and hopelessly in debt; but after how much she's been through—and how much we've been through together in a short year—it would mean the world to us for any support at all. And if you can't donate, even a word of encouragement would be so sincerely appreciated. Every bit of kindness and a reminder that everything will work out makes the battle all that much more bearable.
I thank you with every inch of my heart for reading this and doing whatever you can to help us.
Organizer
David A. Fuller
Organizer
Newington, CT